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What Happens With RA, Without Necessaary Treatment:

Posted by Loret

15 Feb 2012

Last Friday, I went to see the Hand Specialist in Orthopaedic Surgery, in Cleveland, referred by my Rheumatologist.
As I wrote after that visit, I was very impressed by this highly regarded Physician and his obvious expertise and knowledge.
So I agreed to allow him to fix my right wrist, which was a real mess of destruction caused by rampant RA over many years of not being treated aggressively by the Rheumy I had back 15-20 years ago.
This has angered me over the past few days, as so many times over the years,I have said I wished I had had the NSAIDs, DMARDs and the Biologics that are now available. Maybe I would not have had 8 spine surgeries, three other hand surgeries, 2 knee replacements, etc.
But newly diagnosed patients need to not delay receiving these drugs that can stop the progress of the disease and prevent the destruction and deformities that happen if gone uncontrolled for too long.
The drugs are available to make a big difference, why aren't they being used more, sooner? What on earth are they being saved for?
I just hate seeing others suffer and put up with such pain and damage if it can be avoided. I don't want anybody to have to experience all the aspects of RA that I and those of my generation have had to deal with.
So..I received the date for the surgery today. It will be on Monday, March 12. So essentially a month from now. Will have pre-admission testing done on March 1. I can have that all done here and then have it FAXed to the surgeon's office, so I don't have to make extra trips to the big city.
It will be done as an out-patient surgery, so I will go home same day.
Hopefully, six weeks later, I will have returned to full function.
These are the procedures he will do: Synvectomy
Distal Ulnar Resection
Proximal Row Carpectomy
I will be sure to Google those tomorrow!
Loret xxx

Leave a comment See 41 comments

41 comments

sylvi Volunteer

15 Feb 2012

Loret that quick,you'll have your op before i get mine on the nhs. I am waiting 12 weeks for mine. I will get mine hopefully at the end of march. You have it hars over the years haven't you. I hope that you get on ok and i will be thinking of you when you have it done.

I've got another chest infection so more antibiotics. No mtx for the 4th week in a row. I am fed up being ill.
Take care my love. sylvi. xx

TildaT

15 Feb 2012

Hi Loret,

I can see why you are angry for yourself because your RA has been so badly controlled. But it was obviously very aggressive to begin with. Also I believe that each case of RA is very different - the disease seems to vary tremendously from patient to patient and what each of us hope for is a rheumatologist who looks at the way our own RA is developing, the pattern and degree of it. For a lot of people RA progresses slowly and perhaps the sledge hammer of powerful and toxic medication isn't really needed to crack a nut - a nutcracker would be more appropriate?

I myself often wonder about this since I was referred very quickly but because of the shortage of rheumatologists in my area and because I live on an island (my choice I might add) I was never going to receive the same level of care as people living in mainland Scotland. Sometimes people retire or move up here (increasingly) for a quality of life re low crime, fresh air, good state education etc but then get furious that the standard of healthcare isn't what they have received elsewhere - or rather the standard is high but there are limitations, so that strokes and heart problems are going to be more likely to prove fatal here because there's no CAT scanner and the air ambulance service can let people down. It's just how things are and probably it will drive my husband and I south to mainland Scotland eventually - but for now I watch carefully what other people seem to take for granted and just keep telling my GPs that this is what I'd like too so I help to keep them on their toes professionally! Not ideal for me or for them but the compensations of living in a close-knit community are these.

I am shocked however that the anti-tnf decisions for people who haven't been successfully treated by DMARDs is such an issue across Britain and is a post code lottery. This business of having to prove that DMARDs have failed a person - leaving them in terrible pain for a period when their rheumy's opinion should be enough - shocks me very much. I don't think this would apply up here yet because Scotland is governed by a different political regime for many things including healthcare - but this could easily change. Like you I believe that this should be a right where pain and disease management is concerned.

I really hope the handsome surgeon does wonders for your wrist on the 12th March. That's so soon?!

Tilda x

Loret

15 Feb 2012

Very well said, Tilda. Right on!

cathie

16 Feb 2012

Yes I agree we must keep them on their toes

mads

15 Feb 2012

HI Loret
Thanks for that, I suppose to me that is a timely reminder to be grateful for the dmards and stop playing about with them. I hope you get sorted, that is a dreadful amount of surgery you have had.

allanah

15 Feb 2012

Hi loret,

Just back from hospital again and told again they dont think the Biologicals are working, seems like steroids so far are the only thing that give relief but only short term.
But i am glad to read what you have said because I'm sure that without all the help i've had I would be in a sorry state. I hope our operation goes well. They are now wondering what to do with me, do they try a third biological (i've had Remicade ( got anaphylaxsis) and Enbrel.

Work however starting to run out of patience as this has been nearly a year now, but I worry when I hear about peoples difficulty in getting any benefit.

Also my Dr isn't that handsome!! and gets annoyed quickly although I think maybe he is just as fed up as me of things not working.! I know they (and I) get fed up of seeing me two times a week for the past year!
Oh well, I'm glad I didn't get this as a youngster.

Axx

Loret

15 Feb 2012

I also went through Remicade, which really did work well, then after 6 years, tried Humira and Enbrel. Gave each of them 6months or more, not enough effect. Now on Simponi, and it was close to a year after that I could look back and say, I didn't do that a year ago. (I keep a journal)
People respond differently, at different rates and so do the Biologics (anti-tnfs) That amazes me, but then I think that drug had to work through many years of damage before it could make a difference.
So far, so good. Hang in there girl! Stay above water! L.xx

TildaT

15 Feb 2012

Well my doctor (GP) is far too handsome for his own good and gets endlessly harassed by female patients I'm reliably informed - so I get really paranoid that if I see him too often he'll think it's because I fancy him too. So have now started going to the woman GP if she's available instead, or just leaving message for him to phone me back if it's a query, because I really don't need paranoia as well as RA. It's horrible having to go to the doctor so often isn't it? I hate the feeling I have now of being a regular in the waiting room.

But Allanah and Loret I do so hope you both achieve some drug induced remission very soon indeed - you are both so deserving.TTx

Loret

15 Feb 2012

Hmm, Thanks Tilda. For heaven's sake, if your GP is too handsome for his own good, why not enjoy looking at him if you have to be there anyways? Heheheh. Unless you feel he is not as competent as the other. You think he might be stuck on himself, think he's god's gift to women? Maybe he is totally unaware of how he appears to others

allanah

15 Feb 2012

Thank you,

I would so go to the good looking doctor.....a nice perk of the NHs.

My middle son is very handsome and turns heads wherever he goes and I have been there when women have rubbed against him in a crowd....as his mum I was fuming mad with them,but he is just very patient and puts up with it!!! He doesn't notice what he looks like but he owns nightclubs and dresses well and is used to being seen as cool I think.
Gorgeousness has its downside...although I've not had the problem!! PS the other two are very good looking too, they must get it from their dad's side! lol
Axx

Loret

15 Feb 2012

Ha , interesting!!..my second son is very attractive, he has been compared to Patrick Swayze many times. He is in Hollywood now, but not as an actor. He has been a Master of Ceremonies, a DJ , at a nightclub and for weddings, receptions, whatever public event he gets into, just hand him a microphone, he's very personable and out going. Has had a radio program for awhile. He had friends from college who contacted him through Facebook and told him there were lots of jobs in Hollywood.
So he is working on the sets of TV programs, setting up the lighting and sound systems. He just loves Hollywood.
\ My doctor son is the most handsome one, my oldest is a red-haired cutie, looks like an Irish Leprechaun, and the youngest, I always equated with a young Robert Redford> A mother's imagination.
How did we get into that topic??

L .xx

allanah

15 Feb 2012

LOL!! Don't know that's why I like this site! My eldest would you believe also does sound and projects things onto screens and buildings!! He would love to do it full time but it doesn't pay enough here so he works during the day on IT and works nights and weekends as DJ at clubs and festivals and other times in his company which he has just started so he could maybe follow his dream of live streaming and projection to music. I should suggest he goes to Hollywood but I suspect it would be just as hard there, unless u know someone who needs a hardworking English boy..... lol....just getting the plug in lol. He also has his own show on a monday night in our area on the radio. they all sound very alike.

My middle son looks a bit like a presenter called Vernon Kay here in England who does quiz shoes called family fortunes but when he was younger, you could google him!! And he is the nightclub guy and does promotion also. So he is very busy too.

My daughter is 15 and slim, blonde and very beautiful,( no... I have been told that !!) tonight is at a Drama camp as it is their half term holiday and has already asked her brothers and their bosses for jobs when she is at Uni, seems to run in the family.
and that's when I get frustrated as I was always like that, running around two jobs and working at festivals. Now I'm feeling stuck, just hope it gets better. But yeah proud mum!! and still wish my hubby was more romantic than buying a cheese grater for valentines day lol
have a great night, off to have amitriptyline to help me sleep, high ho!!

Axx

Loret

16 Feb 2012

A chees grater! Omylord! Let me guess...it is one that will save your hands and fingers ?
It is so amazing our kids follow such similar paths. Son Duane says the opportunities are endless. Just got a brief note from him tonight, as I had commented to him on facebook that he sure was a man of few words. Anyways, he was in a hurry, putting on a big bash, with 3 bands, and hoping to make alot of money. I have no idea who he works for , or if he has already started his own business as he wanted to do. He went out there from Ohio, just 11 and a half months ago, with $1200 in his pocket. Seems to have gotten along OK. He said he doesn't need much, he's just a farm boy from Ohio and is used to poverty

allanah

21 Feb 2012

Good news from my boy tonite just to follow up on our chat..he got on a radio station's board!! So good step forward. Otherwise I'm sending him to stay with Duane!!!!!!!lol (would cheapen our rent!!)

Oh and yes the cheese grater is to save my hands, or more like his as I've had to start asking, could u grate that cheese for me!! Wonder if I'd get a chef if i said I couldn't cook anymore, mmmm there's a thought! Axx

Loret

21 Feb 2012

hahaha, just be sure you stipulate the statistics you want

I bet Duane would love to have a hard working English boy to put to work :)!
good luck to your son, hope one thing leads to another, sounds promising. Isn't it such a relief when one of our lambs achieves something?

debbie58

27 Feb 2012

lol oh its good to laugh and you two proud mums have made a good start to the day for me. You both sound as though youve had a hard time but have come out the other side with humour still intact. So glad i found this site 1st time iv smiled and laughed 1st thing in the morning so thnx again ladies keep it up

allanah

27 Feb 2012

Ha ha , cheers me dear!!
Axx

TildaT

15 Feb 2012

Yes I think he's a bit anxious about women patients who are around his age. I think he knows we are all a bit smitten. He must have had women come onto him badly because once when my newly bereaved widow friend (from the States and very modest) asked him politely if he was planning on going anywhere nice for a holiday while he was taking her blood, he looked at her and said very emphatically "yes I'm going on holiday this year - WITH my PARTNER!" and she was completely mortified and nonplussed and never went near him again.

She told me to find another doctor fast as she dislikes him greatly now but I haven't because I find him intelligent and thoughtful and he is the one who diagnosed RA and stuck his neck out to get me diagnosed by a rheumy. So I alternate between thinking him rather wonderful and wanting to slap him hard on my poor friend's behalf!

My pal who is a therapist down south told me that he must have had a very bad experience of a patient making a pass at him to behave in this way - so consequently I do get a bit paranoid, although he's always very solicitous and polite to me at any rate but then I make sure I don't ask him remotely personal questions! TTx

TildaT

15 Feb 2012

And yes Allanah - I rest my case - it must be hard to have women treating you like a sex object especially when you are their doctor - but really for anyone who is blessed with great looks and body (can't imagine this myself!). My middle one was same until acne hit. Now the youngest is shaping up to be the adonis - and like you I credit my OH's genes not mine! TTx

debbie58

27 Feb 2012

ladies, ladies do not give OH credit for looks surely they must come from you well my children get their good looks from me lol and im not vain honest lol

allanah

15 Feb 2012

lol,

Ye I think we get very close to our Rheumies as we are very dependent on them,and spend a lot of time in their company being looked after, I'm sure some people get hung up on them, but if the Dr thought that they would have an escort or send us to another Dr!!!

So I think we are quite sensible, nothing wrong with looking and appreciating I say and partner can be male or female lol !! Do you agree?

Axx

Loret

15 Feb 2012

Ummm, well...he could have said "my lady friend". Maybe he wanted her to think it was a guy partner, so she would drop the idea forever.
My Rheumy is only a couple years older than my eldest son, so, I don't have any infatuation with him, and we do sit and talk about lots of things not RA related. He is a very compassionate and understanding dr.
He once told me it breaks his heart when he can't help a patient enough, or soon enough. I know a couple ladies tell me he is a softy with tears. I haven't tried that. To him, I am the tough cookie, so wouldn't want to ruin my image.

TildaT

15 Feb 2012

yes I agree Allanah I do have sneaky looks but just don't want to be caught! And frankly there is a sort of partnership between doctor and patient and we do need to trust them and get to know them pretty well with a chronic long term condition. That's why I spread things out between my two GPs - the man being the main RA one and the woman for when I'm not feeling such a tough cookie after all. Have never cried in front of any doctor except once when I was having a threatened miscarriage and was kept in hospital overnight - my GP of the time visited me and lord how I blubbed. He was great though. He had 6 kids and a nutty wife so he said he was just coming in to see me for some respite from the chaos of home and we ended up chatting until deep into the night while he kept an eye on me!

I hardly know my rheumy to be honest as have only met him twice for about 30 mins in total. If the meds work it will be only every 8 months or even more so but then I live on an island where GP is the main doc for everything. TTx

TildaT

15 Feb 2012

I like that Loret - I think my GP thinks I'm a tough cookie too and like you I don't intend to spoil that. It was horrible for him to have said that to my friend because she'd just lost her beloved husband at the age of 42 and he obviously just didn't think about her or it came out wrong. He has a long term partner who is a woman lawyer but I'm quite certain that my friend wasn't coming on to him. She's quite physically unconfident because of her weight and she is very reserved but even if she had been developing a crush on him there surely would have been better ways to deflect her without rubbing in that he has a partner when she had just lost hers?

A funnier story that I might have told on here already (sorry if so) is that our neighbour's niece went to see him with her young daughter and as they were getting coats on to leave her daughter looked up at her and said "hey mum is this the doctor you said you really fancied because he's so buff?". The poor woman legged it dragging said daughter with her - purple in the face.

The man who told us this tale said "silly woman all she had to say was "no darling that was the other one down the corridor" look him in the eye and wink at him but of course we never think of these smart retorts until well after the moment has passed!? TTx

allanah

15 Feb 2012

We can all have brilliant comments in hindsight!!! I would just have died as well!!!
Axx

helixhelix

15 Feb 2012

All I can say is thank goodness my rheumy is a woman about half my age so there's nothing to distract me from pestering her with questions, and we do manage to chat a bit as well (although she is attractive so perhaps the male or gay patients have problems with that....).

But going back to the starting point I think one of the things that doesn't help is that it does take quite a while to learn to love your meds. At the start I was really reluctant to take so much as an aspirin, as I've never been one for pills. And the seriousness of MTX was scary. So it was more my lovely rheumy trying to persuade me to take them. Looking back now I realise I wasn't as pushy as I could have been (and would be now!) Px

TildaT

15 Feb 2012

I agree Polly - I wolf down those MTX tablets with enthusiasm these days. I'll put up with little red facial spots and slightly frizzy hair with pleasure as long as the pain stays away and I can drive, navigate stairs, chop food and work with my hands. TTx

SusanP

16 Feb 2012

I havwe been being treated since Dec 2011.....Sulpah...arcoxia...lapiz...a couple of lots of steriod too when got so desperate with the pain I rang my specialist nurse. When I went the consultant was shocked with how aggressive the RA is an ordered an xray and did a DAS - 5.63! She said she was considering Metho. I have not had any feedback from the clinic and have an appointment today at blood monitoring....I now have further problems ...more pain...immmobile shoulders and nodules on most of my finger joints... sore feet and cannot do the most basic tasks without help...I have been off work since middle of Jan too and this worries me ...should I push for more help or are they doing what they can in the time scale...sooo fed up of pain now......and bit scared of Metho as lots of people say makes you sick and a really dont need that too..... HELP WHAT SHOULD I DO >>>????

Loret

16 Feb 2012

Dear Susan, I could not add anything to the advice you have already gotten here, these are some of the "cream of the crop" on this site. They know what is available and how to go about getting the best help.
I will add one thing most of us have found..Methotrexate is better tolerated in the injection form, rather than the oral tablets. The oral ones cause more side-effects of feeling crappy, nauseated, stomach irritated.
I'd suggest, when you are seeing you Rheumy, to ask for the injectable. Don't be afraid of it, It really is very simple and the needle is so tiny, it's virtually painless. Plus, the Docs feel the injectable gets right to the blood stream and circulates faster and more efficiently than the tablets. Makes sense. Some people actually do not digest the tablets enough to get the full benefit.
Most importantly, get thee to your doctor, make sure you tell them all that you have told us here, insist on pain relief meds, especially while the MTX is taking time to make a difference. Hang in there, it really does get better. Loret xx

SusanP

18 Feb 2012

aah thanks soo much..the support and advice on this blog is just brill..it helps me to get things into prospective too. Some-one else that has or is suffering can give the best advice and it can be trusted...here I am off to the clinic with the advice in hand,,,,THANKYOU AGAIN...

TildaT

16 Feb 2012

Okay Susan. Firstly I want to say that I've been on Methotrexate since the start of December '11 and although I wasn't nearly as badly incapacitated as you are now - I am still finding improvement daily in terms of what I'm now able to do. I have absolutely no side effects from it and my rheumy and GP both told me that it is generally well-tolerated which is why it's become one of the first line DMARDs. It can be damaging to your liver, kidneys and white blood cells but that's why you will be closely monitored on it, especially to begin with. You may be one of the unlucky ones who suffers nausea and hair loss etc but remember that those like me who are fine on it are less likely to come onto forums such as this - so the posts you read about horrible side-effects are probably the few who really can't tolerate this drug. I was horribly worried but now I take it cheerfully and am moving up a dose next week without any concerns.

If you are in this much pain you should certainly be pushing for more help - firstly by spelling out how awful things are for you just now with your GP. He or she needs to know so they can access the various services such as occupational therapists and physiotherapy for you ASAP. Both are currently doing a lot to help me and my GP initially referred me to the physio. If they know precisely how you are struggling with basic tasks such as getting clothes on then they will make this a priority I'm sure. Also your GP can prescribe more effective pain relief and write to your rheumy if he or she isn't satisfied that progress is being made with controlling your RA.

Lastly you might be better off putting this post on as a blog or question as well because more people will come to your help. If you've done this already forgive me - I am using a smart phone to write this as I'm working but just wanted to be there for you as you sound so desperate. Really hope this helps and you find the support you need here and proper pain relief very soon. TT xx

helixhelix

16 Feb 2012

Hi Susan,
What Tilda says is spot on. But sadly the treatments for this disease are slow to take effect so although being in pain since December is a long time for you, it can take 3 months for each treatment to start working so for the docs it's early days. But don't panic, lots of us have found that once they start working you have really remarkable improvements. I was virtually bedridden with a DAS of over 6 when I started the drugs, and am now nearly back to doing everything fairly normally.

But I do think you should push to have your meds reviewed as starting on MTX (methotrexate) could be a good thing for you as it is supposed to be the best of the bunch of drugs they try first. I take MTX, and Sulpha and Hydroxy (plus a load of other stuff) and the side effects are ok. And you should speak to a doc about better pain relief, as there are many different things to try. Polly

SusanP

18 Feb 2012

aah thanks soo much..the support and advice on this blog is just brill..it helps me to get things into prospective too. Some-one else that has or is suffering can give the best advice and it can be trusted...here I am off to the clinic with the advice in hand,,,,THANKYOU AGAIN...

helixhelix

16 Feb 2012

Hi all

On the subject of charming docs, coincidently there's an article in papers today about being better if you don't like your doc! Based on some US research. But not sure if I think its true and certainly not for us...

www.independent.co.uk/life-...

Loret

16 Feb 2012

OK, I read that. Not sure that is an accurate analogy! Just because you like your doctor, because you can see that he/she is intelligent, compassionate, well informed, knows how to handle your health problems, doesn't mean he isn't good for you. And if he is good-looking, and looks directly into your eyes, as he explains things to you...so what

I know there must be some docs, especially the older ones, who will give a patient whatever they ask for, but if it is not wise to use, or not indicated in the management of your health, a good doctor will know when to say "NO", no matter how influencial the patient may be.
So I agree, not an accurate report and certainly does not apply to us

TildaT

16 Feb 2012

Heck I'm not sure about that article Polly? A part of me is always worrying that I led my rheumy to make a diagnosis when he might well have left it longer if I'd been a bit less proactive? I do agree that some doctors are very ready to dole out sleeping pills and anti-depressants where others are very cautious indeed. My OH tells me lots about this because of working in the old folks home and his colleagues often have experiences or know which GP to go to if they want to be signed of sick etc?

My OH never takes time off work but at one stage he had a middle ear problem that made him very sick and dizzy and he went to see a locum and she was incredibly brisk and refused point blank to sign him off for a few days while he recovered. I guess I like my woman doc because she's quite generous and empathic and more like a friend whereas my rheumy and GP are both quite detached and not men who invite emotional revelations or tears so I like them both for this too but only if I'm feeling quite robust. I don't think they dole medicines out to please and that's quite comforting in a way. The thing that annoys me is that no-one told me how overweight I was a year ago and have been for years and that's what this research is trying to address I suppose - doctors being afraid of being honest. The tv programme Doc Martin (with Martin Clunes) springs to mind here (sorry Loret it's a British soap drama series set in Cornwall). He has that mildly autistic (Aspergers - like my son) way of saying it as it is bluntly, with no frills or charm, and the enormous popularity of this programme suggests to me that this is how people would like their doctors to be really? TTx

helixhelix

16 Feb 2012

I don't think it's a true reflection of the world either - but then who knows whether the research has been reported accurately by the newspapers! Maybe there are some that are a bit ready to offer antibiotics for colds, and valium for passing gloom, but I don't it's the majority. And for us it's probably the reverse since it seems that you have to be writhing on the floor in agony before anyone will do anything significant. Rheumy docs seem to have been through a special cautious school judging by the stories on here. I can't imagine anyone wanting to be diagnosed with RA, or take MTX if they didn't have to, but maybe there are some.....? Px

Loret

16 Feb 2012

Just a thought...Do Rheumys get reprimanded by their licensing bureau if it appears they are running up the bill on DMARDS and anti-tnf s ? L.xx

TildaT

16 Feb 2012

Not here they don't - they just get the patient's surgery to prescribe it and then the local NHS pays for it so the GPs are very mindful of their budgets where I live! TTx

SusanP

18 Feb 2012

My GP Listens to me and then comments...he is brill and always says it as it is even if its not good news. On the subject of my RA he was prompt to get my referral and has asked me to keep in touch with him by booking tel,. consults to let him know how I am doing and what the clinic say after each appointment. He is supportive and optomistic and caring when he has to be. I do trust him and his oppinion. By the way he is not bad looking but I go to him as I know I will get the answers based on his expertise and experience even if it is not the best of news....he always acts out any treatment he believes is needed and does not hold back even if it is costly to the surgery...

Loret

18 Feb 2012

Great! Did you get a date yet for the referral? Did you get any pain relief to take care of you before you see the referral? Keep on keeping on..L. XX

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